WebMD BlogsMy Experience

Grieving What Chronic Illness Took From Me

July 11, 2019

By Brooke Abbott, as told to Jennifer Clopton

I always knew what I wanted to do with my life and who I wanted to be. Growing up in Hollywood, both of my parents were involved in the film and television industry. I wanted to follow them into what felt like the family business and become a TV and movie producer.

By the time I was 24, I was well on my way. After several internships for major networks like HBO, I landed my first production position with a television show and it was the culmination of a very big dream. Having grown up with parents in the entertainment industry, being able to set out on my own and make a name for myself felt really important, like I was claiming my own identity.

It wasn’t about having my own set chair or being someone’s boss, or even the glamour of making movies. It was the idea that I was able to wake up everyday and make a living doing something that I loved with people that I loved. I was a part of a community, and I was working alongside people I had admired for years. I finally had a seat at the table, and it was everything to me.

Then one day on set, I leaned into a cameraman and collapsed.

It was a moment that had been years in the making. I had been experiencing symptoms since college -- sudden weight loss, fatigue, dizziness, stomach pains, bloody stools, an urgency when I had to go to the bathroom -- but I had always blamed them on stress. Even after the symptoms got so bad that I had to drop out of college, I ignored them. I was too focused on my goals to pay attention to my health.

But when I collapsed on set, I knew my symptoms could no longer be ignored. I went to the doctor and was diagnosed with ulcerative colitis, a form of inflammatory bowel disease (IBD) that causes chronic inflammation of the digestive tract.

The timing couldn’t have been worse. My career was just beginning. I had just started a great job on a TV show, and the future looked bright. I was becoming the person I had always wanted to be, and it was wonderful. I was determined not to let my diagnosis slow me down, and I certainly didn’t want to tell anyone about it. So I kept the information mostly to myself. I did start medication to manage symptoms, but I didn’t take it regularly. And though my doctors recommended that I minimize stress, I didn’t make any changes to my busy lifestyle.

In fact, my life accelerated. I took job after job and went on to work for shows like Desperate Housewives and many others. I fell in love, got pregnant, and had a son. I was putting my attention and energy into a lot of things -- but my health wasn’t one of them. I was so busy trying to appear in control, happy, and strong that I didn’t allow myself to notice my feelings or the physical and emotional manifestations of what was happening to me.

And in 2012, it all finally caught up with me.

By then, many other symptoms had started piling up. I developed arthritis, hair loss, cysts, and chronic fatigue, and I couldn’t breastfeed my baby. The toll on my career and my relationships was immense. I lost everything. I lost my job, which not only meant the end of my lifelong dream, but also the end of my health insurance. My life partner couldn’t take it anymore, and we broke up. So at the age of 28, my son and I moved in with my mother.

That’s when I finally got serious about my health. I sought out a great doctor, but it was too late. The next time I got sick, I was rushed to the hospital and I nearly died. There were spots of perforation on my colon that no longer responded to medication. My weight was down to 90 pounds. I was malnourished and dehydrated, even on an IV. Doctors had no choice but to perform a colectomy and remove my diseased colon.

That process actually involved three surgeries over 6 months, and truthfully, it took that time for me to come to grips with what was happening to me. Suddenly I was a single mother, not yet 30 years old, without a job or college degree. I was living in my mom’s home with a toddler and a piece of my bowel sticking out of a stoma, a hole doctors had to create in my stomach so feces could drain out of my body into a bag. I now live with a J-pouch (an ileoanal pouch that is internal).

At my lowest point, I felt lost and trapped -- in my body, my home, my mental space, and even my bathroom. It felt like I was no longer the person that I had been. The life I had worked so hard for was gone, and I didn’t have a clue how to process it all. My grief felt endless. I tried to move forward but I couldn’t. I was surrounded by confusion, anger, resentment, and despair.

Then one day my mom suggested I start telling people my story. "Maybe it will help you find a way to deal with it and make sense of it all," I remember her saying. It felt really hard to get out of the cloud of chaos that I was in, but deciding to share my story was the first step out of that fog. I started being honest about what was happening, first with myself and then with my son, my family, my friends, and the world.

I started a blog, and it became a connection point, introducing me to other moms whose stories sounded like my own. I found a new sense of belonging, and in time that helped me find my place in the world and a new path forward.

But the grief stays with you. I think there is always some level of regret and sadness for the life you thought you were going to have and the things you can no longer do, and that may stay with you forever. My son is an actor, and when I walk on set with him now and see a producer doing the job I once dreamed of, it definitely hurts. It’s a painful reminder of what might have been, and there is a void from that unfulfilled dream. I also feel that pain when I am unable to be the kind of mom I see others moms being.

I always allow myself to feel those emotions when they come. I just let them wash over me. But I no longer feel trapped by them because I refuse to stay in a place of grief. I realize a much bigger part of me is alive and that is the part I choose to focus on.

There are things this disease has shown me about myself, like a strength I didn’t know I could have. It’s brought many amazing opportunities and people into my life that I am incredibly grateful for. Over time, I think part of my grief has turned into motivation too -- to advocate for others like me, lobby on Capitol Hill, and go back to school, things I am so proud of and would never have done if all this hadn’t happened to me.

Sometimes life forces you to take a detour, give up your old dreams, and find new ones. I am not the person I once imagined I would be. But this is who I am now, and I love my life. I’ve discovered my new normal, and there is a great sense of happiness, peace, and contentment that you find when you refocus in this way. I simply can’t imagine getting this second chance at life and not doing something useful with it.

Brooke Abbott is an IBD advocate and author of the popular blog The Crazy Creole Mommy Chronicles, which tells her life as a single, working mother with an autoimmune disease. She’s also theco-founder of IBDMoms, a resource for moms living with inflammatory bowel disease that you can follow on Instagram. You can also follow Brooke on Facebook, Twitter, and Instagram.

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